Patients with Alzheimer's Disease who live to the end stages will almost certainly lose the ability to eat normally. They may become unable to mentally process the mechanics of what to do with food. The reflexes that enable them to swallow safely may be lost. In these cases, many have their lives extended with feeding tubes, whether or not that may have been what they wished.

Yet both the direct experience of caregivers as well as the available medical research has strongly indicated that while inserting a feeding tube may sometimes extend the life of someone with advanced Alzheimer's Disease, it does not slow the progressionof the disease, nor does it seem to improve the quality of life. In fact, many nurses, doctors and family caregivers say that it often makes the affected person obviously more uncomfortable.

If you are caring for someone with Alzheimer's Disease you should be ready to face the decision about whether to use a feeding tube some time in the future.

Ideally, you will know your loved one's wishes, have them documented in a Living Will or Advanced Directive to Physicians, and be ready to stand up for what your loved one directed. If you don't know, and you don't have the necessary legal documents, you may be forced to make a quick decision at a very emotional time. Or even worse, the decision may be made by someone at a hospital who doesn't know you or your loved one.

Ultimately, if you and your loved one aren't making the decision, how the decision to insert a feeding tube is made may have more to do with the culture of the hospital and economic concerns. Patients in nursing homes don't appear to be spared because, unless they are enrolled in a Hospice program, they are often sent to the hospital when their condition deteriorates. When they return to the nursing home, often it is with a feeding tube.

Here is more information from a recent article in the Journal of the American Medical Association:

Advanced Dementia and Feeding Tubes

Despite being of questionable benefit for patients with advanced dementia, and despite whether patients have specified in writing that they did not want life-extending treatment, new research finds that hospitals with certain characteristics, such as those that are larger or for-profit, are more likely to have a higher rate of feeding tube placement.

Dementia is a leading cause of death in the United States, and estimates project that 16 million individuals will have dementia by 2050. Characteristics of advanced dementia can include severe functional impairment, eating problems, malnutrition and recurrent infections.

"The decision to place a feeding tube in a patient with advanced dementia is one of the sentinel decisions that family members and health care professionals grapple with. . ." Well-known studies have concluded that, "the use of feeding tubes in patients with advanced dementia does not improve survival, prevent aspiration pneumonia, heal or prevent decubitus ulcers [bed sores], or improve other clinical outcomes," the authors write.

In fact, inserting a feeding tube may cause unintended harm, because these confused patients may have to be physically restrained or heavily sedated to prevent them from pulling on the tube.

Despite this evidence, a previous study reported that more than one-third of nursing home residents with advanced dementia have a feeding tube inserted. Many were inserted during a trip to the hospital for more acute care than the nursing home could provide.

Joan M. Teno, M.D., M.S., of Brown University, Providence, R.I., and colleagues examined the characteristics of those acute care hospitals associated with the greatest use of feeding tubes among nursing home residents ages 66 years or older admitted to the hospital with advanced cognitive impairment.

Results of the study verified that feeding tubes were more frequently inserted in for-profit hospitals than in hospitals owned by state or local government. Hospitals with a greater number of beds (more than 310 beds vs. less than 101 beds) also had higher rates of feeding tube insertion, as did those with more use of intensive care for chronically ill patients in the last 6 months of life.

"Feeding tube insertion in persons with advanced cognitive impairment demonstrates a disconnect with the existing evidence of their effectiveness," the authors write.

"These results are the first to our knowledge to document the national variation in rates of feeding tube insertions among acute care hospitals. Future research is needed to better understand why this variation occurs and to intervene to ensure that feeding tube insertion reflects informed patient preferences based on discussion of the evidence of risks vs. benefits."

For more information about the article in the Feb. 10, 2010 JAMA article you may contact:
Mark Hollmer
mark_hollmer@brown.edu
401-863-1862
JAMA and Archives Journals